I’m OK today and the sun is out again. Yah!
8am medications:
Pantoprazole 40mg
Ciproflaxin 500mg (anti-biotic)
Acyclovir 400mg (anti-viral)
Itraconazole 100mg (anti-fungal)
After too many requests, I resorted on Tuesday to sending a very assertive email to the head of Clinica Ruiz in Puebla to force the set up of a follow-up Zoom consult with the neurologist. It finally took place this morning. *Big sigh* I am beyond, BEYOND exhausted from years of advocating for myself when something should just be done.
Anyways, a quick recap. Last week the original consult was not thorough, and since it was cut short she said we could talk after she looked at my MRIs from Canada/Mexico. I wanted her valued opinion overall on my case history/prognosis, and baseline EDSS score which is the measurement of how advanced your MS is.
After today’s consult, I’m fully satisfied and have new information to consider both good and bad. She thinks the HSCT will halt inflammation in my brain/spinal cord, maybe shrink the current lesions, and gave me my EDSS score. Last summer it was 7.5 even though I’ve never been able to ‘wheel self’ (as defined in the EDSS scale). Very recently my mobility has increased, and she puts it at 6.5 maximum. This is excellent.
Lastly, she suggested I see a surgeon regarding the multiple disc compressions and protrusions in my C-spine. Obviously, this is exacerbating my situation and was worse from last June’s MRI. These issues are a result of many years of amazing sports/accidents, whiplash injuries, etc. I’m not too fussed about it, and believe me I have no regrets on the thrills and adventures I’ve had. Onward…
I decided today was the day (not Friday) to get rid of my hair before it really begins to fall out. That way when it’s taken off, it can be pulled into nice solid in pigtails for it to be cut off, which is the way they want it for donating. I don’t have any tears to shed over losing my hair, and please peeps, no need to say or think ‘Jenny, it grows back’. I know it will. From previous significant hair loss (thanks Alemtuzumab), I know for me it takes years before good, quality hair grows back and to a length I would appreciate. I can’t even think that far.
I started having pain in my bladder and while going pee this morning. Fernie called Dr. Elias who is my overseeing physician and I’ve been given a drug called Fenazopiridina (50mg) to take every 8 hours to quell the pain. It’s a lateral drug to Phenazopyridine (Pyridium). It really helps.
Mid-afternoon I went out to the parking lot to chat with Elvia for a while in the sun. She’s so sweet.
Strips of hair ready to donate
Click here for video of farewell to my hair
Click here for a time-lapse video of the hair removal process
I can’t even begin to imagine how exhausting it would be to constantly have to push and ask for things that should just be done! Aside from wishing you steady improvement and good health, I wish for that burden to be lifted. You remind us all of the reality of dealing with a chronic disease, and you do it with such grace in a way that is so easy to read. You have a true gift at that! Those long blonde locks of yours are going to make someone very happy. Way to go, G.I Jenny!! ❤️🌹😘
❤️
I’m so proud of your fortitude Jenny. You are one strong and beautiful Chiquita. Always digging deep finding the strength to advocate and get to the truth. So glad you were able to get the answers you were looking for.
The salon day looked pretty cool to be honest. Love your getter done attitude. Keep it coming! Your gorgeous locks will make someone very happy. You look absolutely gorgeous with your perfectly symmetrical face and smile. Hope tomorrow is a good day and you get some time in the sun. Don’t forget to sunscreen your knogen 😜
Love you
Jenny, Abriella and I watched your hair being cut and both of us commented on how pretty you are and how nice the shape of your head is! We love your strong, positive approach to everything you are going through!
You are one strong warrior! I’m so glad that you got the additional consult with the neurologist. You are right. We all really have to advocate for our own care. Someone is going to be very lucky to have that gorgeous hair!
You are so strong and brave. I’m glad you have your new friend and the sunshine. Thinking of you so much my sweet friend. xoxo
You look beautiful bald. 😍
I love that you decided to donate it. 💕
You’re so sweet! Hope you packed plenty of warm hats/knit caps.